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September 5, 2019

Rough night for Julia. She didn't feel well and threw up on and off until 6am. She got 3 string changes over the night, which added to her misery. She finally fell asleep at 6am and stayed asleep literally all day.

Speech therapy did their best to stick to the schedule and they gently tried to wake her up for her session. Julia just did the no-finger and kept falling back asleep. She opened her eyes once just enough to see Reed, smile, wave, and go back to sleep. So no therapy.

She went on her HME as scheduled, but she was in such a deep sleep they eventually put her back on the vent. Also, they added a night time breathing rate back in - a very low one of 8 (that's 8 guaranteed breaths per minute). There were just times, without the rate, that she was in such a deep sleep that she dipped even lower. They're hoping she doesn't need the rate, but it's there in case.

And they found the tiniest spot of pink near the port in her chest (possible sign of infection), so they de-accessed her and now she has an IV and a "no-no" - that's an arm cast thing that just keeps her from pulling at the line. So I REALLY REALLY REALLY hope this spot of pink is nothing. We definitely don't want an infection on round 11.
But Julia woke up for her evening care, gave out some smiles, lots of cuddles, and is now on her way back to sleep.

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I received SO MANY useful comments from last night's post. Wow! A few things to mention:

--- Someone from the rehab place in Allentown commented and said they CAN offer private rooms for trach/vent patients! I have no idea how our case management team didn't know that, considering "they've sent lots of kids there". So even though it's quite a drive, it opens that up as an option. However, I will need to know why they consider Julia a candidate for rehab and Dupont does not.

--- I will definitely call Dupont myself. Yesterday was the first we heard Julia might not be anything other than an ideal rehab patient. (And now I know if we need to have a protest on their lawn, you'll all show up! [...seriously don't do that though.]) I want to get more details from CHOP first - who they spoke to, what exactly they provided, and why they believe Dupont doesn't think she's a fit.

--- I'm also going to talk to our oncologist and explain our concerns about infection risk and time of year / need for acute rehab. Perhaps she can just say Julia needs an extra month of recovery, and then that fixes our timing issue.

--- The NP told Reed today that they will evaluate Julia at a reasonable time for her PT assessment. I'm not sure what prompted that clarification, but that's good.

--- It's very unfortunate that everyone going through a medical crisis (or I guess any crisis) doesn't have this amount of people to draw on for advice. From the very beginning, Julia's followers have shared their knowledge and suggestions in all different areas, which have allowed us to make better decisions for her... sometimes life-saving. I appreciate how fortunate Julia is.

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And Gabriel is sooooo sick =( I'm on FaceTime with him and he looks miserable =( I'm sure it's just back-to-school germs (or he has what I had), but I hate seeing him feel so awful. Charlene is taking great care of him, but ugh. And he just puts his arms out and says "Mommy. Hugs." with the biggest sad face. UGH. I'm going down to see Julia tomorrow for the first time in over two weeks, so I can't see Gabriel and get his germs.... so now I won't have seen HIM in two weeks!

I hope Gabriel's whatever passes quickly and I hope Julia's pink spot is absolutely nothing and there are no emergencies.